Monday, December 22, 2008
I don’t mind saying that I’m a little nervous about changing meds, since the Keppra (in addition to the surgery) has been the first time in a very long time that we’ve have seizure control. I know that the game is different post-surgery, however it’s just hard to forget the years and years of medication failures. I am praying that this will work for her with few side-effects. Her neuro says that one of the most common effects is supposed to be some weight gain, but at 113 pounds, I’m not really concerned about that for her right now.
The girls are out of school now for the holidays. They were supposed to go to their father’s for Christmas, but didn’t want to. They chose to stay here for Christmas and then go over there for the weekend after, however, he didn’t care for that and was extremely vocal with them about it. After some heated discussion with them on the phone one night last week it was passed to me and I got the attitude. He told me that they had no choice in the matter, they HAD to come. I very calmly told him that he was mistaken – they DID have a choice. I told him that we always encourage them to see him when it’s his visitation, but that we don’t force them. He then claimed that there were plans that he had made for them for Christmas that they just didn’t understand. I asked him if he told them what those plans were (he is notorious for not telling them what’s going on) and he said no. So I asked him to share with me what the plans were and that I would let them know and encourage them to go. At which point he told me that it was none of my business. Yes, I said, it is my business if he would like for me to talk to them and encourage them to visit. His response was that it wasn’t their business either and that he wasn’t “getting into a pissing match” with me (???) and hung up on me.
Sometimes trying to be fair and do the right thing is just too hard some days. Geez.
Sunday, December 14, 2008
Sunday, November 16, 2008
Well, as you know we've been on seizure watch here at the ole' casa. There have been no more seizures since Wednesday, however, there have been frequent auras, which are little seizures in and of themselves. It's been a hard lesson for Kels, but one that I think she's learned well. The paralysis lasted nearly two days and because she bit her tongue all to pieces, it's been hard for her to talk and eat. I hate that she is suffering, but maybe it was for the best.
We're waiting to see that the meds get control again – seizures, auras, and all. If there's no control, then I can up her meds a little to gain it. She's been requesting that we keep the baby monitor on at night for just in case. And if Kels wants it, then we do it. She missed school last Thursday and Friday and as a result, lost a binder and a book in the shuffle from the classroom to the nurses' office so she's behind some in her classes. She was on the prayer list at church and there were tons of people asking about her this morning. She nearly bugged out of going to church because she knew she'd have to face people, but she did well answering their well wishes and how are you feelings.
It's been a long week. Next will be better, I know.
Thursday, November 13, 2008
I took Kels to the doctor this morning to rule out any infection that might have caused the seizures yesterday. Nothing. She has an acute case of sinusitis (as always – she is the allergy QUEEN!) but nothing else. We had some prescriptions for other meds to drop off, so while I was at the pharmacy, I asked for a print-out of all of Kels' meds from June so that I could update the copay sheet for the ex. I noticed with only half of my attention that the last time we refilled her Keppra was October 11. Huh. Today is November 13. And I remembered seeing plenty of pills still in the bottle at home.
I didn't say anything to her at the time, but when we got home I went and counted the meds left over and there was well over a week's worth. So I asked her again (because we just went through this yesterday when trying to find a reason for the seizures after six months of none) if she had forgotten or skipped any pills. This time she admitted to missing a couple of morning doses when she was running late and didn't want to go back to the house and miss the bus. So I pointed out that there was more than a couple of morning's doses left in the bottle. And then I asked the question that really brought out the reason for the seizures. I asked her if she stopped taking the Keppra on purpose because of the side effects and she started crying and said, "Yes."
There you go. I didn't fuss at her too much because I can totally understand her reasoning. She doesn't like who she is on Keppra. She doesn't like the mood swings or the irritability or the altered personality. I can understand that. She also went on to tell me that she thought the epilepsy was gone because she "didn't feel it anymore." Again, I can understand that mentality.
I did, however, point out that she didn't feel the seizures because for once in her life the medicine was controlling them. Not that they were gone, but that the meds were working. I also took the opportunity to ask her if being a more agreeable person over the last couple of weeks was worth the last two days (and future few days) of unstable seizures, muscle soreness, and an altered routine. And she said no. I told her that she was nearly an adult and that she needed to help take responsibility for her health and that included making sure that she took the meds that regulated this disease. Not until she began to feel better, but to maintain her good health.
And then I went to my room and cried for her, because this is her struggle.
Wednesday, November 12, 2008
I got a call from the nurse at the high school today. Kels had a seizure in the middle of her advisory class. From the sound of it, it was a doozy, too. So I drove like a maniac to get there. As soon as she saw me she began to cry and said, "I thought I was done with this." It broke my heart. My heart wanted this to be her cure. I knew that it wouldn't be, but I wanted it for her. We knew going in that the surgery would improve her quality of life, but most likely would not eradicate all seizures. And it HAS improved her quality of life. She went six months without a seizure. Six months. Beforehand she would have trouble some days going six hours. My conscious brain knows that this was for her benefit.
My mom's heart, though? It breaks for my baby.
Tuesday, November 11, 2008
Pretty enough, thin enough, good enough, etc? I have struggled with this in some capacity my whole life. Sometimes this struggle has hit me pretty severely. At one point, the anxiety related to this crippled me so badly that I sought counseling at the urging of my wonderful husband because it was affecting our brand new marriage. I couldn’t go out in public with my handsome husband because I was constantly comparing myself to those women around us who had the gall to eyeball him in front of me. And of course, I wasn’t enough.
All growing up, I always heard that whatever I had earned, made, won, (insert word of your choice here) wasn’t enough. I could do better! I was an honors student all the way through school, top ¼ of my class all the way through college. But you know what? It wasn’t enough. My “A” could have been an “A+”. Simply being good at whatever my chosen sport was wasn’t enough. If I played, I had to play to win. Games weren’t just for fun; they were tough competition (see play to win comment). I remember being told that no matter how good I was at something, there was always someone around the bend waiting to take me down, who was better thanme. And then, when I finally left home and married and got out to where I could find myself as an adult, I married a controlling man who told me I wasn’t enough. I wasn’t thin enough, pretty enough, blonde enough (I could quote quite a few hurtful and abusive things that had been said to me over the thirteen years of that marriage) and as a result, the permanence of my insecurity was born.
As a Christian woman, I know that our value is not found through the eyes of others, but through the eyes of God. He created us, we are enough for Him. My Christian mind knows this; my worldly mind doesn’t. Our pastor delivered a great sermon this past Sunday on this very topic, using the Song of Solomon as his background. While we’ve been taught that particular book teaches us how a marriage should be, the pastor came at it from a different direction – as the bride of Christ, this is how He loves us and thinks of us. Our wrinkles and our rolls don’t matter to Him. He loves us no matter.
But how do we equate that to living in the day-to-day world? How do those Christian women around me get such a better handle on this than I can ever seem to? Why can’t I get past this particular struggle? Why, at the age of nearly 40, can’t I find comfort and security in my own skin? At times, it’s an issue that affects my marriage and, even though I strive for it not to, my girls. I DO NOT want my young women to grow up with this kind of mental anguish.
I have a wonderful man who loves me for who I am, not what I “could” be. I have three beautiful, young, Christian women. I have a great life. I have a great God that oversees it all. So tell me, when will I feel like I’m enough?
Tuesday, November 4, 2008
I'm sitting here watching my wonderful hubby browse through each and every station getting the latest election coverage. Personally, I don't really care who wins. I did vote; I did my civic duty; I cast my vote for who I thought to be the lesser of two evils. That being said – the state of my life doesn't hinge upon who sits in the Oval Office. My tomorrow will look the same as my today, no matter who wins because my life is governed by a higher power.
This past weekend was not only Halloween, but it was Homecoming for my girls' high school. Only Kate went this year. She was beautiful! As a mom, sometimes I am so proud of my girls for no other reason than they live and breathe. Sometimes I am proud of what young ladies they are turning into. And sometimes, like this weekend, I am proud that they are beautiful on top of everything else.
The other two went trick or treating around the neighborhood. One as a renaissance princess and the other as a pirate. LOL. A pirate who isn't used to wearing dresses and kept hitching up her drawers all night long.
Wednesday, October 22, 2008
Kate has been strongly hinting (okay, outright begging and pleading) for Driver's Ed classes. She's 15 and itching to be mobile. I have never personally been in the car with her, but my wonderful hubby and my dad have let her drive a few times in controlled situations. So last night, as we are pulling to our driveway, she asks if she can drive me around the block. Taking both of us totally by surprise, I said okay, pulled over and let her behind the wheel. This is when hilarity ensued.
First, she took at least 2-3 minutes to very carefully adjust her seat. And the mirror. And the seat again. Then the side mirror. Then she looked at me expectantly and I said, "Wagons Ho!!" I got the withering teenage look for my trouble and we were off. At 5 miles an hour. On the left hand side of the road. I laughed a little and told her she should probably get back on the right side and she willingly obliged. As we came to the "U" part of our street, we saw one of our neighbors standing in the road talking to another neighbor. As we're creeping around the curve (3 miles an hour for the turn), I plaster my face to the passenger side window, mouth "help me" and start beating my chest. They are laughing so hard that even Kate begins to laugh. We get all the way around to the entrance of our driveway again and I had her stop and told her to turn on her left turn signal. At that point she panics a little and says, "Oh, I don't know how to do that," and I tell her to just push the little stick on the left side of the wheel. So she begins to switch the stick up and down and up and down to make it blink. At that I totally lost it and began to laugh hysterically. I told her that these new-fangled blinkers were automatic and she only had to push it down once for it to blink.
I told her she could go around one more time and so she increased her speed to nearly 10 miles per hour (woo doggies!!) and as we get the curve again, Mr. Neighbors are grinning and ready for us. In unison, they take a HUGE step off the road into the lawn and cover their eyes. It was the funniest thing I have ever seen. We made it safely home where Kate declared that it was fun driving with me, more than she expected.
Sunday, October 19, 2008
I think the allergies combined with the frantic pace of daily life have finally gotten to me. Today I've been tired to the point of exhaustion. All I want to do is lay down and sleep. I knew it was bad when I snapped at Cam for telling me how to do something on the computer. LOL. I live with a techno-nerd who is a computer specialist by trade and for fun and he is always telling me how to do things. So when the 8-year old did, I guess I snapped. To be fair, though, Cam is so very smart that sometimes I forget that she is only 8 and that 8 year old know EVERYTHING!!! Always!!!
I'm hoping that this week is a little better week at work and not so stressed. Kate has training only on Tuesday and Thursday, so there's not going to be a lot of after school running around (I hope!).
Saturday, October 18, 2008
…but tonight I had to suck it up and do something that I've been putting off for months. I had to buy some reading glasses. I didn't want to – it's one of those signs of aging that I fought as long as I could. But my arms just aren't long enough anymore. I had my two youngest help me pick out some that they said were cute and not too "middle aged" looking. I don't really hate aging; I hate the SIGNS of aging. The gray hairs, the wrinkles, and now – the reading glasses. I've said for years that aging is unfair between the sexes. As men age they get distinguished. As women age, we get old. The funny thing is is that I don't FEEL older most days. If I had to put a number on how old I feel, it would probably be 25. LOL. If I had to put a number on how old I look, it would be 40. Mentally I stopped aging a long time ago. Physically, I look like a middle-aged woman.
I guess if our society wasn't so obsessed with youth and looking perfect then it wouldn't matter so much. I really struggle with this. I KNOW that I shouldn't judge myself by society's standards, but my subconscious doesn't always agree with that. As a woman, and especially as a former fat woman, I always feel like I just don't quite measure up. I don't know how to counter that sometimes. Any opinions and suggestions are welcome.
Wednesday, October 15, 2008
A couple of days ago I was getting ready for work and putting on my makeup when I hear this little voice from over the banister say, "Mommy, I have to tell you something." So I look up and there was Cam peering down at me. She tells me that she got up really early because she thought we were running late. So she got dressed, came downstairs and ate breakfast and then started watching TV waiting for us to come out of our room. She said when she turned the TV on, she saw that it was midnight, so she went back to bed. And slept in her school uniform since she was already dressed. So her question was could she still wear the uniform since she only slept in it for a few hours.
Kels has been over five months now without a seizure. She still does occasionally get auras, but she says she can tell that they won't go into a seizure. I don't know how she can tell the difference, but I'm glad that she can. The Keppra still gives her the irritated, aggressive nature that just isn't her, but we will address that when we go back to the neurologist in December for her routine follow-up. She goes from being the laid-back and generally easy kid to what we call "Satan's sister" in the blink of an eye. It's hard to deal with sometimes.
We went to Miami two weekends ago for hubby's birthday to meet the rest of his family. His sister found him after over 30 years of no contact and for his birthday, she and her husband paid for the flights for he and I to go and meet an entire village it seemed of relatives – cousins, aunts, uncles, etc. It was almost like watching the prodigal son parable unfold in real life. It was fun, educational, and entertaining. The culture differences didn't seem to matter at all (hubby is ½ Hispanic and ½ Columbian – I am 100% Texas white-girl). I jokingly call my Tex-Mex Spanish "Pig-Spanglish" and I pulled more Spanish out of my memory that I remember learning. LOL. I'll try to post some pictures from the weekend later on.
Monday, September 29, 2008
Snapped Stop Sign
Community Breakfast (no power for 13 days)
I neglected to mention yesterday that the wonderful hubby had to go get a tetanus shot because as we were working in the back yard trying to string up a temporary fence to keep our dog in the yard, he stepped on an extremely rusty nail embedded in a piece of wood. He was okay, but he claims the shot hurts worse (even a day later) than the nail did. While he was at the urgent care waiting an hour for a 15 second shot, I finished piecing together some hogwire across the downed fence to keep the neighbor's Cujo in their yard and our Lassie in ours.
Sunday, September 28, 2008
It's been a long two weeks. Hurricane Ike swept through here two weeks ago and wreaked havoc on our area. We fared alright – we have our electricity back on after 13 days and life is beginning to feel normal once again. Our home came through okay, however, the top 60 feet of a nearly 120 foot oak tree in our back yard took down part of our garage and back yard. Still, we are so very blessed as it is nothing that cannot be fixed and our insurance will cover.
That Friday night we set the girls up in the great room since we are prone to losing trees in serious storms and we didn't want them upstairs just in case. I don't think my wonderful hubby and I slept a wink all night long. The winds and rain began late Friday afternoon and by about midnight, it was getting pretty serious. We kept hearing large branches hit the roof and each and every time we would run upstairs to make sure there were no leaks or damage. At some points we could literally feel the roof lift a little and the pressure inside the house change. At 3:30 we heard an extremely loud "crack", but nothing else. A little before 4:00 am we heard a whistling sound and then the very foundation of our home shook and vibrated. We rushed to take a look out of the back windows, but all we could see was tree. One of our very tall and magnificent oak trees was now our back yard. It had come down on the garage wall and roof and had taken out our back fence.
The funny thing about that is that we had parked our one and only car inside the garage to keep it safe. LOL. We NEVER park in the garage; however, we figured that since we had just the one vehicle, we should move it indoors. God was watching for us, though, because the roof caved in, but didn't come quite close to the roof. We did have one casualty – our big chest freezer that was against that wall.
Even funnier is that the girls – who are normally afraid of regular thunderstorms – slept through the entire hurricane. They never heard any of the limbs hitting the roof an they never felt the tree hit the back yard.
In the light of day, our neighborhood looked like a war zone. Nothing compared to Galveston and other coastal communities, but still – it was pretty desolate. It took 13 days for us to get our electricity back on. During that time we lived outside during the day and ran the generator at night for the fan. Community meals became the norm and the pull of solidarity was strong.
Monday, September 1, 2008
It's been quite a while since I updated last. School has begun (Thank You, God!!) and all the girls have made it through the first week. This next week life gets back into what we hope with be our normal routine again. Since Kelsey's surgeries in May, the wonderful hubby and I have been working flex/remote hours at work so that she is not home alone and let me tell you, that makes for L-O-N-G days.
Kelsey is back in school, as well, and she is glad to be back. We figured out that she's been out of school essentially since January of last year – first due to all her absences and then from being placed on homebound instruction. For a teenage girl – that's a rough time. She is doing wonderfully, though, with no seizures in nearly three months. Right after surgery she began to get severe headaches, but those are resolving as well. At her last neuro check-up, her doc said that she will essentially always have epilepsy since they were unable to remove all the parts that were causing the seizures. The important difference now, however, is that we have control. Control with just ONE medication instead of four. Control with no seizures in-between. Control. What a wonderful word, right? If she maintains control as well as she has been, then her quality of life has improved 1000%.
Kaitlin is an athletic trainer this year and rotates through all the sports, however, it's high-school football time in Texas and that means that her primary sport right now is football. She's enjoying it and has really taken to it. Cam is Cam. <smile>. She's a good kid and too smart for her age. Her private school combines the 4th and 5th grades so this year she'll get a little higher scholastic interaction, which is something that she needs in my opinion, to continue to challenge her and force her to grow. She is so very intelligent that she sometimes stagnates on her grade-level work.
Life is good and God is great. I am so glad that we are on an even keel for now.
Sunday, June 8, 2008
I guess in a house full of girls I should expect nothing less. #3 is going to church camp on Wednesday and won't be back until Saturday afternoon. She's fine with going, but that piece of drama involves getting my dad to take her up to the church on Wednesday in time for the bus to pick them up. We were raised conservative, old school, Church of Christ and I left the denomination a few years ago – our home church is a Bible-based, non-denom and my dad is one of those that believes you can't be any religion other than CofC and that it's the only church mentioned in the Bible and therefore our church isn't really a church. All well and good except that dad doesn't hold that opinion to himself and mentions that fact to my girls every chance he gets, which makes them uncomfortable and question me in detail each and every time. No one is really worried about Wednesday except for me.
#2 has some drama issues regarding her natural father and their upcoming visitation, which is supposed to begin this Sunday and go on for two weeks. She doesn't like going over there all too often and really only visits out of sense of duty towards #3 (keeping an eye on her, I suppose), but she's old enough to decide for herself whether or not she wants to go. Well, she doesn't want to go and she told him so this evening and he seemed okay with it, but it took days of her worrying over it and asking my hubby and I constantly what to tell him, what words should she say, etc. He has a habit of trying to "guilt" the girls into going when they don't want to, and when that fails, bribing them with stuff to do. The last time he tried that, he told them for two weeks that he had "special tickets" to some event, but would never tell them what – that it was a surprise, so all three went – even #1 – and they did nothing all weekend. He claimed that he ended up not being able to get the tickets to whatever it was. So anyway, needless to say, she was a little anxious about telling him she didn't want to go. And sure enough, he tried to tell her that it was okay except that now he had no one to watch #3 and that he would have to try to switch things around. We kept telling her to be strong when she spoke with him and for once, she was.
#1 – what can I say except that I am sooooo glad not to have to be a 16-year old girl ever again. She came to me a few days ago in tears and told me that she really still liked her old boyfriend and that she wanted to get back together with him when he had asked her a few weeks ago, but she told him no. I asked her if she had felt that way, why did she say no and her response was that she didn't think it was fair to put him through the uncertainty of her surgery and what she might have ended up like. Whew. Heavy stuff, right? So in my mom's wisdom, I told her that it was never too late, that he really liked her and that if she felt that strongly about it then she should tell him. Well, that's when the extra-super drama began because he didn't return her texts, phone calls went to voice mail and there were no return calls for two days. Well, we know this boy and his family fairly well and I just couldn't believe that he would blow her off, so we drove by his house this afternoon after church and she left a note on his door to give her a call. So tonight, his mom texted her back to let her know that his phone was dead and that he was at band camp and wouldn't be home until next Sun. There was such a look of relief on her face when she came downstairs to show me the text that I couldn't help but be relieved for her.
Life is sure fun some days – but never, ever boring.
Thursday, May 29, 2008
Yeah! First official walk with the Physical Therapist (she gets that keen fashion sense from me, BTW)
The homebound instructor is here and he and #1 are wrapping up the end of the school year. It looks as though she will pass these two subjects (there are two instructors – one for math and science, one for English and history), even though math will be by the seat of her pants. This year though, that's good enough. At least she won't enter her junior year a half semester behind. We finally heard from the rehab facility yesterday and she is set to begin the week after next, so by the time marching band begins late July/early August, she will physically be ready to start.
Seizure-wise, she hasn't had any seizure activity for a week now. I think that's absolutely incredible. She's sleeping much much better compared to before surgery. I can't remember if I said before, but the medications were never stopping the seizure activity on the brain, so she could never "shut off" at night to sleep. In addition to that, the seizures were tied in some way to her sleep patterns, so the majority of them would occur at night. According to her report, she's sleeping deeper, better, and waking up more refreshed. Her two-week post-op with her neurosurgeon was Tuesday and he was thrilled with her progress.
For the first time in quite a few years I can look forward in her life and see a future that is wide open. It's way too soon to tell yet, but even if she does require minimal meds to continue to retain medical control, it won't impact her life like it would have beforehand. I can envision her future and it doesn't revolve around the epilepsy. Wow. What a concept, right? I guess our goal now is for her to learn how to be a normal teenager and for me to learn to be a normal mom. I can't even imagine it.
Monday, May 26, 2008
It's been about 2 and a half weeks since #1's 2nd surgery and she's doing great. Because of the continued residual seizures, her neurologist decided to minimally up her dosage of Keppra and since then, she's had really no seizure activity to speak of. What she does have is a rip-roaring case of the "poor me" due to her hair loss. We ended up shaving her head because the surgeon shaved literally half of it off (and it was about 2 foot long to begin with). She looks like a young Sinead O'Connor. The shaved head only emphasizes how petite she is and how fine her bone structure is. She, however, can only mourn for the loss of her hair and it is making her horrible to live with. Physically she is feeling fine (although a little physically tired now and then – that's expected). We have taken her out a couple of times – once for lunch, once to a movie, and once to her little sister's awards ceremony. Each time it's been a battle to get her out, and she will admit that it is because she's self-conscious about her ultra-short hair. There have been times over the last week that I know I'd enjoy poking myself in the eyeball with a toothpick more than going anywhere with her. She won't even begin to think about a cover-up, a hat, or anything else.
We tentatively began her homebound instruction again this past Thursday and she did great. She has a real possibility of being able to finish out the year with no detriment to her scholastically. Math, however, continues to be her Achilles' heel, but if she applies herself for the next 2 weeks then she will even complete that course on time and with a passing grade.
I am having some difficulty getting her Physical and Occupational Therapy scheduled, since all the places that we've been referred to all agree that she needs to be seen sooner rather than later, however, none of them are able to fit her into their current caseload. I'm going to begin calling again tomorrow to see how soon we can get her in.
Monday, May 19, 2008
#1 came through the second surgery absolutely fine. Her resection began late Thursday afternoon (May 8) and lasted only five hours, which was much better than the eight hour time frame they gave us. The surgeon was hopeful that even though they could not remove each spot that seizure activity begins from, they got the two largest areas and he is positive that even if she still has some residual seizure activity it will be much better controlled and that we have improved her chances for a better quality of life. As it stands now, she went into this taking four different anti-seizure medications and is currently only on one. Woo!!
The even better news is that since the day after her second surgery, she has been consistently awake, coherent, and cognizant. As a result, we have a much better idea of her functioning. The physicians expected her to lose some peripheral vision, however, she has all of her peripheral, it's just a little "off" and it is believe that it will resolve itself over a few weeks' time. Additionally, they expected her to need significant physical therapy due to a loss of left-side function, but she has been up and walking and working with the in-house physical therapy team and they have only deemed it necessary to order light PT/OT on an out-patient basis due to a small lack of coordination, not gross loss of function. She has had four seizures since coming out of the resection surgery, however, her neurology team has assured us that this is normal under the circumstances and is in no way an indicator of a lack of success of the procedure. She could actually have seizures for nearly 3-4 weeks afterwards, but due to the surgery itself and not the epilepsy. We have also noticed that the tone of her seizures has changed -- and seemingly for the better. They do not last nearly as long and she rarely loses complete consciousness with them and regains her strength and alertness immediately afterwards.
We were discharged on Mother's Day (what a great gift!!) and she has been recovering really well at home. This was MUCH sooner than the 2-3 week hospital stay we were told to initially anticipate for these surgeries. God is good and I see a great life ahead for my baby!!
Monday, May 5, 2008
It's been a long, tough day. We arrived at the hospital this morning at 6:00 am for #1's surgery. The grid placement went well, her CT looked good, however, they didn't have a bed in the monitoring unit for us until nearly 9:00, so we spent nearly 6 hours in the recovery area waiting. Right before they were to transport us to the unit, #1 had her first seizure. It was a doozy, lasting a minute and a half. The bad part was that none of her electrodes were hooked up because we were still in recovery, not in monitoring. She just had her 2nd one of the evening, lasting a full minute. Hopefully we won't have to wait long for them to see enough good ones to record so that we can get this second surgery over with soon.
My baby is in a lot of pain, the morphine and Tylenol 3 aren't helping much. On top of that, the severe seizures that she is having will have her sore for days afterwards. I know that this is just the first day, however, I guess we expected less pain since it is the brain. I'm guessing that it's actually the incision site itself that is hurting, although she is so out of it that she is unable to verify that. I've spent the majority of this day worrying and crying for my baby. This is just the first day, though, to a life that we are praying will be seizure free.
Sunday, May 4, 2008
It's late here – nearly 11:00. The house is quiet, except for #1 tossing and turning that I can hear over the monitor. In just about 8 hours, my baby will have the first of two surgeries. Tomorrow's surgery is to place the electrode grid over her right parietal lobe, with electrode strips in other areas. This will help the surgeon to determine more exactly which areas of the brain to remove on the 2nd surgery. In order to do this, they will have to capture seizures while the grid is in place. To better facilitate seizures, she has been taken off of all her anti-seizure meds. My baby looks like she is going through the DT's. Or a better description would be that she looks like a Parkinson's patient. Her hands are shaking so badly at times that her entire arm moves. Her feet and legs are twitching constantly. Her aura comes and goes, but we haven't seen one seizure as of yet. She's gone from taking 14 pills per day to none as of this evening. The Trileptal was the first to go about a month ago and four days ago, her neuro pulled her Lamictal, Keppra, and Klonopin.
I am afraid. I am afraid of the brain surgeries themselves. I am afraid that the beautiful, wonderful young woman that I have the privilege of calling my daughter will not be the same young woman that comes out of surgery. Most of all, I am afraid that she might be one of the few that this surgery doesn't work for.
I have given my child to God to watch over for the next couple of weeks. I'm just borrowing her on this earth and He does a much better job of taking care of her than I do.
Wednesday, April 23, 2008
Oh, the drama here over the last few days. Last Thursday, wonderful daughter #2 brought home a letter from school regarding her excessive absences. Of course, my first question was, "What excessive absences?" Come to find out, said daughter has been skipping school here and there. For what? No apparent reason – just to take herself a vacation day or two, or seven. Then, when questions, she ratted out #1 – turns out #1 took herself a vacation day or two herself over the last few weeks. My wonderful husband was relaying all this info over the phone to me while I was at work, since he was home with #1 that day for her first day of homebound instruction. I got so very instantly angry, that my first words were, "You better tell those girls to give their hearts to God because their butts are mine!!" What I actually heard him say was, "Your mom is VERY angry." My next words were, "I hope like hell that they are still there when I get home because fur will fly!!" Which again got mistranslated to, "She will speak to you when she calms down." Heh.
The thing is – on the great, grand scheme of life, this wasn't a big deal. On the other hand, though, they lied – they purposefully sneaked out (dressed for school and then waited around the corner until we were gone and came back home. I don't know WHY they thought they wouldn't get caught. But the punishment was swift and severe. I told #2 that she would have to call me from school – a school line - each morning so that the number popped up on my caller ID and I KNEW she was where she was supposed to be. And I told her that the first time she "forgot" to call, I would leave work immediately, drive to school, hunt her down and stay right beside her for the rest of the school day – even cutting up her meat at lunch if need be. And then when she showed disbelief, even saying, "You won't do that," I replied with, "Dare me – just once."
Oh, teenagers – they are wunnerful.
On the epilepsy front, we are nearly through ramping down the Trileptal. At the end of next week, #1 will be on none whatsoever. She is scheduled for an MRI on Friday evening and her pre-admit papers and blood work on Friday mid-day. Just a little over a week away and my baby will be going under for the first surgery. Just yesterday was her 16th birthday and I had a moment of sentimentality and nostalgia. She left school so quickly that we didn't have time to give her a 16th birthday party with her friends. And now that the seizure activity has dramatically increased, we can't really do anything right now, either.
My dad had to back out of coming down to stay with the other two children while we are in the hospital because my dad has decided that mom might not be "with-it" enough to stay by herself. However, mom also decided that she didn't want to stay at my house because the bed wasn't comfortable, the chairs weren't comfortable, etc. You name it and she had a reason NOT to be here. Just a couple of weeks ago she decided that she wasn't welcome at my home (not that I ever said that) and wasn't going to come anyway. I'm not sure where she got that info, but it's in her mind that she's not welcome here.
Anywho – that's enough for now. I'll update more as we get closer to surgery.
Tuesday, April 8, 2008
Wow – it's been a while since I updated. On the seizure front, this past Friday was our last neurology visit before surgery. Her doc decided to begin to wean her off the Trileptal (ramping down about 300mg per week). We decreased her dose beginning on Saturday and on Monday morning right after arriving at school she lost the feeling in her left arm. Her typical aura is numbness and/or tingling on the left arm and leg. This scared her, as she said it happened very suddenly. She called while we were nearly halfway downtown on the way to work and her phone kept cutting in and out. We couldn't understand her and didn't know if it was because she was in the middle of a seizure or in a part of the school that didn't get good reception. To make my nerves even worse, I couldn't get anyone at any extension I dialed at the school to pick up. I could just imagine #1 somewhere in the middle of this 3000+ student campus seizing. As it turns out, she made it to the band hall, grabbed a buddy of hers and they made it to the nurses' office. Even better news is that they approved our application for homebound instruction for her – the ARD is scheduled for Thursday so that we can officially make it so.
Something funny – I told the nurse while I was signing her out that she wasn't coming back to school no matter what the decision of the homebound coordinator was. The risk of her increasingly seizing (say THAT five times fast) over the next 3-4 weeks is too great to have her at school. When we were checking her out of the attendant's office, the attendant gave us a "Return To School" pass. I told her that we wouldn't need it, that #1 wasn't coming back. She said, "That's okay, she can bring it with her tomorrow for her advisory teacher". I said, "No, she's not coming back at all this year," which gained me a very concerned look from the attendant. She finally said, "Well, she'll need it when she returns to class," at which point I just gave up and took the pass and told her that I'd make sure #1 had it in her backpack at the beginning of her junior year. At that point the nurse and #1 started laughing and we all merrily trudged out to the parking lot.
Saturday, March 29, 2008
LOL -- this picture was taken by one of our soccer dads. My husband and I threw up a quick site for the team this spring and we get submissions from the parents. This one just cracked me up!!!
My girls have always played some type of sport. #3 luvs her soccer and we play spring and fall. #2 has the natural grace and athletic ability, but hasn't been able to decide upon a sport until this last year. And her choice isn't really a sport -- it's dance. She is in process of trying out to be a athletic trainer this next year and I hope it works for her because it will keep her involved and active.
#1, poor baby, has no natural grace or ability AND if the sport involves a ball in any way, shape or form, she usually gets hit in the head or gut with it. Example: When she was 6 she played soccer for one term. I can remember her being gung ho until she was rushing the goal at one point and the goalie kicked the ball HARD for a 6 year old and it flew right into her stomach, not only knocking the wind out of her, but knocking her off her feet and on her back in the middle of the field.
Or how's this one: One short year later she decided to try softball (WHY do they call it softball when the ball is harder than a baseball??). That was the very year -- the very season she was diagnosed with epilepsy and she had just gotten out of the hospital the week previous. Her coach was warming up with her and she wasn't paying attention as was her custom. He threw the ball at her and she turned around JUST in time for it to hit her right between the eyes, causing her glasses to go flying and again, knocking her flat on her back. That poor man was beside himself because he had just hit the epileptic in the head with a ball. I think he expected that he was responsible for each seizure she had after that.
Life happens, and for #1, it happens around seizures.
Friday, March 28, 2008
The neurologist's office called this afternoon to discuss our decision to place #1 on homebound instruction at school a month early. After explaining that she's missed so much school the last 12 weeks and the fact that trying to catch up was adding undue stress, combined with the fact that she will be missing the last six weeks of school anyway due to the surgery, they agreed that homebound would be best. #1 herself has mixed feelings – she's glad to finally be rid of the having to play catch up, but she's disappointed that she won't be allowed to attend school with her friends and that she'll have to make up the electives (homebound instructors will only teach your core classes, not the electives). I think it is a wise decision, though.
It's funny – one of my co-workers has a daughter in her mid-20's and she is going through her first MAJOR breakup and it's been worse on mom than on the daughter. I was sitting in her office this morning while she was telling me the happenings of the last few days and at the end she said, "But it's NOTHING like what you are going through." That's not the first time she's said that to me and as always, my response is, "We are all mothers and the trauma of our children affects us no matter what it is." We've been dealing with #1 and her issues for so long that it's a part of our regular life and so I don't feel as though my family or my life is different in any way except our struggles are medical in nature. I've even had people say after meeting #1, "You'd never know that she has problems, she's so normal looking." Hello??!! #1 is the face of epilepsy – it's not a life sentence or a diagnosis of automatic retardation or brain damage. I guess they expect her to look "damaged" in some way, not like a normal teenager. I'm real fond of saying that the world doesn't stop because #1 has epilepsy, #1 has to learn how to live in with world with her epilepsy.
On other family notes – soccer game for game at the unjust hour of 8:00 AM – IN THE MORNING!! So much for sleeping in some. I'm already tagging tomorrow as a nap day (that either makes me extremely old or extremely tired – maybe both). It's also my wonderful hubby's grandma's birthday, so we'll be up late tomorrow night celebrating the big 85 with her.
Later – got to get some much needed sleep.
Thursday, March 27, 2008
#1's attitude takes a HUGE dive with the Keppra. We were told that it could cause moodiness, aggressive tendencies, etc. However, sometimes this normally laid-back, non-agressive, non-violent, sweet young girls turns into the wicked witch of the west, with poisoned daggers shooting out of her eyes, vicious bile-laden words spewing out of her mouth, and OMG!!! -- the stomping around, the carrying on, the tears and the hate (and that's just ME!! You should see HER!!)
By the time we ended up leaving for church last night (which was just an hour and a half after picking her up at school and getting to the house) I was in possession of her laptop, her iPod, and her cell phone. I always tell the girls that while there might be valid REASONS that they feel or act a certain way (like hormones and Keppra) there is no EXCUSE for not controlling what you say or do.
Of course, I ended up giving back the computer and stuff because I am a reasonable person who tries to understand the basis for whatever they are going through. But still...life is tough at our house sometimes.
It's about 9:00 here and all is calm and quiet and normal. I don't know what makes some days worse medication-wise, but today is a welcome respite after yesterday. I came home, piddled in my garden, weeded and watered. I made dinner and the girls had some friends over. I have gotten good family time and life is good.
Tuesday, March 25, 2008
The last few weeks I have been trying to spend as much time with all the girls as possible, but especially with #1. The "what if's" are racing through my brain right now. "What if" the #1 going into surgery isn't the same #1 coming out? "What if" she comes out brain damaged? "What if" she doesn't come through at all? I know that I've placed my girl in God's hands and that He has the ultimate plan for her, however, my human side sometimes struggles with acceptance and these "what if's" are bothering me.
I've had snippets of memories come out of nowhere. For example, the other day I was telling my husband the story of when #1 was about 6 months old and my sister was over playing with her and had her raised above her head, twisting her back and forth and making her laugh. And during one of those over the head maneuvers, the reflux reared up, and with the loudest sound to come of that child's mouth to that point in her young life, she drenched my sister with what seemed like a gallon of baby spit-up. And a half-gallon in my sister's open, laughing mouth (which stopped laughing pretty quick – LOL). I know – really gross, but really funny at the same time.
I remember that baby being my constant companion for the first year and a half of her life, lodged on my left hip, laughing at the world. She was such a good baby, she was an easy-going toddler, and she's been a great teenager so far.
Nothing like mom-worry to bring out the mom-memories.
Monday, March 24, 2008
Today is one of those days where I'm glad to see the end of the day. Not a bad day, per se, but an extremely long day. On the surgical front, I spoke with #1's counselor at school today and we decided to go ahead and place her on homebound instruction. This school year has been somewhat of a wash for her to date and she'd have to go on homebound instruction the week before her surgery anyway, so by beginning a few weeks early, we give her the opportunity to catch up with stressing about stuff. She'll have to make up a couple of electives over the next year or so, but other than that, there shouldn't be a negative from the scholastic point. From a social point, this is murder. Nearly 16 and sophomore in high school isn't the time that you want to be away from the social scene, but I really see no way around it.
My workplace is being very generous with me and my time off. They are allowing me to work from either a minimum number of hours or from home (or the hospital) for a number of hours each day for the entire time that #1 is in-patient. My hospital is just a couple of blocks down the street from the pediatric hospital that #1 will be at. I can get away for 3 or 4 hours a day and put in my time with no time being recorded off. If I didn't, taking that kind of time off would kill us financially. I took a total of 12 paid weeks last year for my own procedures and vacation. Between that time and the time I've taken this year for #1, I just don't have any left. I am so very blessed to be where I am.
I think that we are all ready to get this over with – us as a family, and #1 especially. While we don't lay down and die when stuff like this happens, this past year has taken a toll on all of us. #1 aside, my other two children have gotten the short shrift at different points due to the time and energy spent on other necessary thing. #2 especially feels left out at times and is pretty vocal about saying so. Not in an ugly way, but enough to make me think that I haven't taken enough time to spend with her. She's worried about her sister, but she's a teenager as well, so as a result, she feels shorted the time off from school, the time that #1 spends with us at work, etc.
More later – my new favorite game calls – Chocolatier II. What a game geek, right?
Tuesday, March 18, 2008
First, this school year has pretty much been a wash for her with all the absences and the resulting “Incompletes” from the last grading period. Combine that with the fact that her current grades are struggling right now because she missed so much interim stuff, it makes sense to take the end of this school year off. Secondly, the there is a possibility that she might need some rehab afterwards because of a possibility that she will lost some left-side function. So if we go with the earlier date that gives us four additional weeks for her recovery before the new school year.
It’s a scary thing, but we’ve placed it in God’s hands. With His help and the skill of the surgeon, #1 has a chance at a better life without seizures.
Sunday, March 16, 2008
Today has been one of those days that has seemed so full of grief and hassle and it has gone on forever. It's only 8:45 at night, but it feels so much later. Things are quiet on the seizure front – this latest drug cocktail of Keppra, Lamictal and Trileptal seem to be working, with only one seizure in the last 4 weeks. It's an accepted fact that once an epileptic fails two drug therapies or more that they won't have much control no matter what the drug. #1 has been on too many anti-seizure meds to count, so while we have a tenuous control now, I don't expect it to last. I am hoping that it will last at least until her surgery date, however.
My hubby and I got off to a rocky start this morning, but the good thing about marrying a Christian man is that we both share the same beliefs and after a while, things were back on track. That's about the time my cell phone beeped, alerting me that I had a voice mail. It was from my mother. I think I mentioned a few posts ago that my parents' are heading for divorce. Neither one of them seem to be capable of acting like adults and instead are behaving like a couple of children. Dad has a female friend, and while I don't even pretend to know whether or not they have actually crossed the line and slept together, he has put himself in a bad spot for a married man. Mom knows about the woman, about their friendship and is acting like a jealous teenager – tracking dad down at the lady's house (which happens to be a rental house that my parents own), bad-mouthing him all over town, etc. For the last few weeks now neither one of them has said anything to me about what's going on, but my sister is catching the brunt of things because they are both venting to her, and she in turn vents to me.
This morning, however, mom dragged me into it and the entire day has been spent with phone calls from mom and my sister. My sister is at her wit's end – she's had it and my dad has put her in a really uncomfortable spot because of some things that he has asked her to do. She finally broke down this evening and told me that she just can't take it anymore. She told dad that she had no respect for him any longer and that he needed to drive to her town, take care of this business that he has asked her to do, and then she doesn't want anything to do with him again. On top of that, mom let it be known that my girls weren't going to their house for spring break because of him, which is NOT what I said. What I did tell her was that my girls had already lived through a war very similar to this with their schizophrenic, abusive dad and that I wasn't going to willingly send my girls into their war zone and let them become pawns in their game.
So, my head and heart are full of concern and worry. Worry about my mom and dad, their health, their mental stability, and their 40-year marriage. Concern about a few things here in my own home, and the constant worry that I carry with me about #1 and her health. Worry and concern weigh me down and I'm feeling all used up and old today.
Monday, March 10, 2008
Tomorrow is our appointment with the neurosurgeon who will be performing #1's surgery. She is coming with us to this visit. I did ask her if she wanted to or not and her response was, "Uh, YEAH! I want to meet the person who will be doing my BRAIN surgery, Mom." And I really didn't expect anything different, it was just odd to hear her say it. I think that tomorrow will be her epiphany. The date where the possibility becomes the reality. My epiphany was a couple of months ago when the neurologist called me at work to let me know the most up-to-date test results and the fact that their neurology board had decided to pursue surgery for #1. I literally sat in my office and cried like a baby because the possibility had become my reality.
I don't mind saying that I am scared. I put my faith in God, but my human side comes through when I think about someone operating on my baby's brain. The possibility that my #1 going into surgery might not be the same #1 coming out of surgery. I give this worry over to God each and every day, but because I AM human, I take it back daily.
On other topics, my mom and dad have been married for 40 years this February. Unfortunately, I don't think they'll make it to 41 years. My mom's brain functioning is going downhill quickly, but to top that off, it seems as though my dad has struck up a friendship with another woman which is really causing difficulties in the house. Just as a quick background, my mom is the most unfeminine, non-maternal, hard-nosed woman that I have ever met. She has been difficult as long as I've been alive. To top things off, I believe that she is bordering on a strong diagnosis of either dementia or early-onset Alzheimers. BUT that's no excuse for my dad to decide after 40 years of marriage that he's had enough. He wouldn't leave her if she had some tangible illness such as cancer. But because this can't be easily diagnosed, not something you can touch or read, he's ready to call it quits. On the one hand, I can't blame him because I know more than anyone what it's like to live with someone who is mentally ill (my ex is a schizophrenic). However, on the other hand, she is sick and I feel strongly about leaving a spouse because they are sick and not meeting your needs any longer. I can't worry about that right now, however, there are so many other things going on in our lives that carry greater worry weight.
Sunday, March 9, 2008
Today was a great day! We spent a lot of time (and a lot of $$$) outside puttering around the yard. We bought some gardenia bushes to fill in a space by the garage that our dog used as his personal digging ground. Took some work, some dirt, and lot of back-aggravating labor, but #1 and I finished it up by dark tonight. Oh, and #3 had to help by sprinkling the gardenias with water just as soon as I put them into the ground. And sprinkling #1 and I in the process.
#3 had soccer yesterday morning and got kicked in the leg by a boy on the opposing team. She is mighty bruised up today. I sounded just like my dad when I told her that there was "No crying in sports!" I can remember my dad telling me the same thing playing softball way back when.
My ex e-mailed us that he had four tickets to the rodeo and that he was sick and wasn't able to take the girls. We didn't plan on going to the rodeo; in fact, we had planned on having a great, kid-free day to ourselves, which is something we don't get often anymore. PLUS, we are both so not crowd people and you can't get much more crowded than the Houston Livestock Show and Rodeo. So we offered the tix to our middle daughter and a few of her friends. I believe in giving independence in short, controlled bursts so that the kids learn as they go. She did good, though. Spent all her money, but made it home in one piece.
Tomorrow marks three weeks without a seizure for #1. The Keppra addition to her meds seems to be good, however it does turn her into Satan's sister at some points during the week. The nurse did warn us that it could cause aggressive behavior and man, does it ever. BUT it's a small trade-off for being seizure free right now.
Monday, March 3, 2008
#1's right parietal lobe is where her seizure activity originates from. The docs’ best guess is that she suffered either a stroke or aneurism during development when I was pregnant. The entire lobe is smaller than the others and has a definite lack of blood flow. There are several smaller “spots” of damage on her other lobes, but the worst of it is the right parietal lobe. I know that God is truly a God of miracles, because after seeing so many specialists and having so many tests and results, with the extent of the brain damage they tell us she has, she shouldn’t even be functional. But she is bright and beautiful – a GT/Honors student, very involved in school and church and all-in-all a great kid.
Off-topic weight issues -- my wonderful hubs is a good man (he’d have to be to marry us four women). He is wonderfully supportive and loves me no matter what. He does, however, suffer from foot-in-mouth disease to some extent. I had a gastric bypass over two years ago and a body lift about 7 months ago. In all, I have lost over 200 pounds. He was uploading some before/after pictures to our laptop for me and I was laying in bed reading. Out of the blue, he pops out with, “You know, you were much thinner in these pictures.” Much thinner, by the way, is only about 10 pounds. My lowest weight was about 154 right after the body lift. My current weight is 165, give or take a couple of pounds fluctuation. So when he said that, my first instinct was to get defensive. My inner voice was all, “So what? I’m too fat for you now? I don’t look good? 200 pounds gone isn’t enough?” Being the masochist that I am, what I actually said was, “Do you think I looked better then?” And his answer was yes. So again, the masochist in me stepped right up and said, “Do you prefer my body like that over this?” And again, he pulled his foot out long enough to say yes. To be very honest, I did ask him a couple of years ago to say something if I ever began to gain weight – to help hold me accountable so that I don’t become the fat girl again. But a stable weight of 165 for the last 6 or 7 months as opposed to a steady gain is okay in my mind. If anything—he’s honest to a fault, though.
I will admit that my feelings were incredibly hurt. As a former fat girl, my weight has always been an utterly taboo subject. It was always a major focus of my ex-husband, who used to degrade me emotionally pretty regularly. At nearly 350 pounds, I thought my weight preceded me everywhere. I felt like I was always the focus of attention, and not in a good way, but because I was always the largest woman in the room. My self-esteem and self-worth was totally destroyed for the longest time, but I’ve begun to heal. However, at 165 pounds, I still carry that 350 pound woman in my mind – she lives in my mirror and won’t leave me alone. Because of that, innocent comments such as my wonderful hubs, who truly didn’t mean anything negative by it, get blown all out of proportion. Even now, 2 days later, I’m still pondering and worrying it to death.
Friday, February 29, 2008
I finally got my laptop back this past Tuesday. I only had it for one short week, but I didn't realize how accustomed I had grown to it. It sure beats working on a desktop, that's for sure. My wonderful hubby and I went out of town last week for our belated anniversary trip. We go to a little bed and breakfast in Fredricksberg every year. This year, we really needed the relaxing time alone, as it's been a pretty stressful six months or so and we've got another few ahead of us.
#1 has gone nearly two weeks now without a seizure and very few medication side effects. We haven't adjusted her old meds (Trileptal and Lamictal), but we did add Keppra to the cocktail. Her neurologist called me yesterday to give me the final results of the PET scan and to let me know that the neurology board met for the third time to discuss her case and it was decided that she would indeed benefit from neurosurgery. We meet with the surgeon on the 11th for the initial consult and to schedule a date. We are still aiming for early June so that she can have the entire summer to recoup before beginning her extra-curricular activities in late July. I am utterly serious when I say that the thought of brain surgery on my child scares me witless. I know that the alternative is living with the disease, and that's not feasible. However, just imaging her being opened up sends shivers down my spine and prayers up to God.
It's late and I just finished uploading this week's assignments for school, so more updates later.
Monday, February 18, 2008
This has been such a rough weekend. I hit my low point this morning and had a good cry. My beautiful daughter is having such a rough time of it right now. We have changed medications (actually added an additional one), so now she's taking Trileptal, Lamictal, and Keppra. All with no seizure control. She had two seizures this morning, but I played the hard-nosed mama and sent her to school. Late, but there. We have found that variations from a routine tend to trigger more seizures. So as soon as she could, she was in the shower and out the door. I know it was the right thing to do because she came home in a really good mood. However, she's in a world of pain. Her TMJ is horrible because of the seizures. Her leg muscles are extremely sore due to the contractions. I am at a loss because of not knowing what to do.
My wonderful hubby and I are going for a much needed long weekend away this weekend. My dad will keep the girls so that I won't have many worries. Of all the people I know, dad is one of the few that I trust to take good care of the girls in general, #1 in particular.
More later -- I am mentally tired and need some rest before a new day dawns.
Tuesday, February 5, 2008
#1 had a seizure last night. The Todd's paralysis isn't resolving itself as quickly anymore, so when it was time for her to get up this morning and go to school, she couldn't move her left leg effectively. The wonderful hubs and I both put in a half-day – morning for me and evening for him – so that we could stay home with her. She is missing so much more school than usual right now and it is stressing her (and me) out big time.
The worry sometimes is unbelievable. Not to mention the stress and fatigue. I think I slept for all of an hour and a half last night. We have a monitor in her room (which is upstairs and on the opposite end of the house) so that we can hear when she begins to seize. So, if I wasn't hanging my head over the side of the bed to better hear every little sound on the monitor, then I was running up the stairs to check on her to make sure that little noise I heard underneath the static wasn't a seizure. I know that getting to the surgical point is a process filled with tests and labs and physician visits, however, it just seems as though the days are creeping by. Her depression continues to spiral out of control some days. Fifteen is a difficult age under normal circumstances, however, being fifteen with out of control seizure disorder is rough.
The wonderful hubs and I are taking a 5-day weekend in a couple of weeks to get away and recharge. I feel a little guilty leaving her while she's going through this, but I know that if we don't take some time for ourselves, we burnout. Constant caretaking takes a toll. My dad will be watching the girls while we are gone, and I have total confidence in his ability to handle anything that comes, but I also know that #1 prefers mom when her health issues are interfering and I also know that she prefers to be home when things are bad. So that little chip of mom guilt that is planted on our shoulders when that first little darlin' is born continues to grow with decisions like this. Do we stay? Do we go? What would #1 want? Geez.
Monday, February 4, 2008
I am sitting in my bedroom, watching #1 as she struggles through yet another bad medication day. The combination of drugs and the dosages that she takes sometimes gives her horrible side effects, which include disorientation, migraine-type headaches, blurred vision, etc. Today is one of those days. Actually, every day has been one of those days for the last few weeks. Sometimes I feel as though treating the disease is worse than having the disease itself. I watch the struggle that she goes through some days and my heart hurts for my girl.
She has such strength of character and goodness of spirit, however, these last few months have been really rough on her. Her PET scan is scheduled for next week and then hopefully we can schedule an appointment with the neurosurgeon to talk about the surgery and schedule a date.
We host a teenage small group for our church every Sunday night, but because of SuperBowl yesterday, they are meeting tonight instead. And where is my daughter? Sitting on the loveseat in my room because her concentration is shot, she is in pain, and can't see straight. Back in my teenage days, that would have been the mark of a great weekend!!! But for an epileptic, that's bad stuff.
I spoke via conference call this afternoon to a partial ARD panel to see what can be done about her absences. It was decided that we would modify her schedule and let her come in later in the day so that hopefully most of the issues will have passed before her 2nd period. I have to say, I've tried to get her help scholastically over the last 8-10 years and have NEVER had the good experiences and attention that we have at our current district. She has a wonderful case manager and counselor that have such an interest in her welfare. We are blessed, indeed.
As I speak, my youngest daughter is sitting on the bed playing Xbox with the wonderful hubs. She is a hoot – she can carry on a conversation solely with herself and whichever character is onscreen at the time. I believe they've been playing for nearly 30 minutes now and I don't think she's come up for a long breath in all that time. LOL – I used to ask her every morning when she was younger if she had decided who she was going to be today – Miss Mouth of the South OR Princess Chatterbox. I KNOW she's got her mama's genes in her because I used to be the same way. I come from the day of television commercials that actually had jingles. I never have been a TV watcher, but I can remember sitting in the living room with family reading a book during whatever show they were watching and then when the commercials came on belting out the jingles at the top of my lungs. My dad used to get so very annoyed and it would usually end badly (oh, such as me being sent away or fussed at for my "voice that carries"). But that never stopped me. To this day I can sing some jingles for products that don't even exist any longer.
My next post will begin to give the background on #1's epilepsy and how it was diagnosed. Again, I just want to mark this down for posterity – so one day she can look back on this time – to document the road to surgery – to give mom an outlet that I don't have anywhere else right now.
Sunday, February 3, 2008
This is my first foray into the world of blogging. I mainly wanted a forum to put down thoughts of what we are going through, as a family, in the process of getting my oldest daughter ready for surgery for epilepsy. She was diagnosed about 9 years ago and her seizures have gotten progressively worse through the years. Multiple medication therapies have not been effective for her, so she is in the final stages of getting all the pre-testing finished to be able to have surgery possibly in June of this year.
Background on the family – I am married to a wonderful, strong, Christian man and we have three beautiful daughters, #3(7), #2(14), and #1(15). This is our second marriage each and all the girls are mine from my first marriage, but my wonderful hubby considers them his own and our girls could not love him more than if he were their own biological father.
I'll write more later about #1 and her epilepsy and the struggles she's been going through recently.